Nikorah

Is it possbl to get an Incorrect Narcolepsy diagnosis?

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Hi,

Has anyone out there received a false diagnosis for narcolepsy? Is it even possible? I have a mystery illness that I can't figure out and I have seen all the main specialist and done all of their tests and found nothing but a few elevated antibody tests. Finally had an MSLT,  I went straight into R.E.M. For the first two naps and screwed up the other naps because I took a tiny dose of adderall so I could stay awake between naps (this was after the second nap). It was so painful to stay awake, I didn't even think how adderall could possibly screw up the rest of the tests, derr.. I was dumb and tired, what can I say. Either way, I had two naps going straight into R.E.M. which qualifies me as having narcolepsy. I was in complete shock because it wasn't even on my radar as a possibility. 

When I talked to my doctor he said he is almost sure I have it, almost sure?? He said, that because it was the first two naps, it could be that I was still in the circadian ryhthym time frame and that could cause a false positive. Then my sister tells me that her sleep doctor told her that sleep apnea can so give a false positive. Has anyone experienced this? I have so many other symptoms that I either have narco plus other stuff or maybe whatever is going wrong in my body is causing the narcolepsy. 

I would love to hear from anyone with info or experience with this, thank you so much! 

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You're not supposed to be on any stimulants for at least two weeks prior to testing. If you have been taking adderall for a long time, you will get dependent on it and the sudden withdrawal may cause N like symptoms. I've never heard of anyone having an MSLT the first time without overnight study. Just plain sleep deprivation can cause a false positive on the MSLT along with apnea.

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Yes it is possible. However, lack of proper sleep can cause almost any symptom. Most of us on this board have comorbid issues for which the narcolepsy is probably at least partly responsible. It also seems like if you still had SOREMs, despite dosing with adderall in the middle of the test, that makes it even more likely to be narcolepsy. Poor sleep wrecks everything in your body, so its not as far fetched as you think that narcolepsy could be causing your problems. Specifically, what other symptoms do you have?

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Nikorah

It is possible to get a false diagnosis of narcolepsy, I understand you had an MSLT what did the overnight study the night before show?, what symptoms are you experiencing, Why are you on adderall in the first place? 

Jasonm is exactly right stimulants should be stopped at least 2 weeks prior to the study as should antidepressants as both can alter the results of the studies. Two SOREMPs on MSLT without a prior overnight study is worthless as far as getting an accurate diagnosis.

I would suggest you speak with a sleep specialist and consider repeating the testing in the correct manner.

Good Luck

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Thanks for replying everyone. 

I had a polysomnography the night before but only scored AHI of 3.7. Nothing else of note. I did stop all stimulants and sleep med two weeks in advance and I wore an actiwatch. One of my other main symptoms is unexplained myoclonus. I also feel more than just extreme tiredness (as if that's not enough) it's an overwhelming feeling of weight, it's like I can't move my body at all but I know I can. I feel trapped in my body. I am sure a lot of people do too but does it actually feel like you can't move? I will starve myself if it means I have to get up to get it, I hate it. It's almost like I have an extreme deficiency in dopamine. Provigil helps a tiny bit (I take 400mg) but I do much better if I take adderall. I started taking adderall for ADHD and noticed it helped me with my energy. Now I have grown a tolerance to it so I have to take more to get any benefit and I don't want to go down that road. I have read a lot about amphetamines and the possible damage it can do to dopamine receptors, maybe that's my problem, I don't know. 

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@Nikorah

I hope you are getting ongoing care from your sleep doctor?

I think we all have dopamine issues, but yes, do be careful with stimulants, especially amphetamines. It's not good to damage the very system we're trying to boost. Have you looked into CBTi?

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@Nikorah what do you mean by myoclonus? Like what's happening, when, and for how long?

Do you drink? What's your diet like?

Sleep paralysis or cataplexy can make you not be able to move, but it doesn't last long. 

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I started having random muscle twitches anytime I was relaxed, I had them all over my body. Went to a neurologist and he did all the tests and told me it was myoclonus. I have had it for at least 3 years. After awhile I started to get extreme exhaustion and then tiredness. Everything went down hill after that. I should just post my whole story. Maybe someone can make sense of it.

I don't drink, smoke, or do drugs, except for meds. My diet in the last three years hasn't been the best because I have a daughter on the autism spectrum who despises food, especially healthy anything. Her twin brothers followed her lead. In order to get them to eat, I would make "kid food" chicken nuggets, mac n' cheese, fruits etc but not a ton of greens. Before having kids I swore I would never feed that crap to my kids but their pediatrician said it was better than I thought and they would be fine. I gave them liquid vitamins daily. I have always taken good quality multi vitamins myself. 

My sleep doctor suspects something else may be going crazy on because he thinks I should have had more improvement than I have had. 

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(Sorry if some of this is repeated, I have also done a DNA report with 23andme and this is what I wrote to them)

Thanks to everyone who has responded to my cry for help. I have since been diagnosed with narcolepsy, fibromyalgia and possible seizure disorder. I will be honest, I am not 100% convinced of any of the diagnosis and I don't think my doctors are either. Apparently sleep apnea can throw the MSLT (narco) test off, (my cpap has helped me wake up in the morning like a normal person would instead of having it be almost painful to wake up so there is improvement there). I have nerve pain in my arms most days but occasionally in my legs and other various places (hence the reason they threw me in the fibromyalgia basket).  All of these strange symptoms started with myoclonus (which is why my neurologist thinks I may have a seizure disorder) which I still have today. 

3.5 yrs ago I started having random muscle tweaks, told it was myoclonus with no explanation to the cause.
2.5 yrs ago I got on my 2nd round of accutane (first one was totally fine, no side effects) about the 2nd month in, I found myself sitting on the couch more often and felt very fatigued. (I have always been very active and constantly did projects in my yard or house, I rarely sat down, I had 1.5 yr twins and a 4 yr old as well.) This got worse and worse. I was taking Wellbutrin and adderall (which I had done for years) it wasn't helping so my doctor threw in a SMALL dose of Zoloft that made me even more tired, then switched to Prozac). My myoclonus tripled in velocity over the next couple months. I stopped the Prozac as soon as the myoclonus worsened just in case that was the cause but no change in myoclonus. My muscle tweaks became strong and rhythmic. Then I started feeling pain and tingling in both arms from my elbows down to my fingers and from my knees down to my toes on both sides mostly at night. Some nights it would include electricity surging through my legs, mainly from my knees down. At times it felt as if my legs were constantly flexed, so they burned and burned. I toughed it out for as long as I could until the electricity became too much and I almost checked myself into the ER.  During this time the myoclonus started zapping the bottom of my spine and would ride up to the top of my spine, taking my entire body with it, it was frightening. It was like a violent body jerk/wave. 
My primary doctor, who was new to me (I never saw med doctors for health problems before this because I was very healthy, only a psych for adderall and Wellbutrin for ADHD and energy)instantly told me I had fibromyalgia but would send me to a rheumatologist and neurologist to be sure. In the mean time she put me on amnitryptaline for the nerve pain, It seemed to work a ton but I couldn't stop eating, I gained 20lbs!! But my myoclonus calmed down. Got off that and on to Gabapentin Which gave me nightmares that I would continuously wake from throughout the night, EVERY night, it was HORRIFIC. Then tried cymbalta and it seemed to help for the first week then stopped, stayed on that for awhile with no luck. Finally got into the Rheumatologist who couldn't find anything but a few elevated antibody tests but negative for any autoimmune diseases. Neurologist said I had serotonin syndrome and took me off cymbalta, told me to lower the other two so I cut the Wellbutrin in half and lowered adderall. It seemed to help with any of the strong myoclonus I had left but it was mostly gone by this time. Wellbutrin and adderall work on dopamine not on serotonin (it might a little but not much) so serotonin syndrome was being questioned by My old and new psychiatrist. One of them felt it was more of a drug interaction but I had been taking adderall for 15 yrs previously and 6yrs on Wellbutrin together, they never had this kind of reaction before and it continued months after stopping the small dose of Prozac.

Through all of this my fatigue kept getting worse and I am to the point now that am am almost completely bedridden. I know my body works but my brain, cells or something won't move it. I remember when it first started, I thought it would be important to remember that I was not depressed and it was definitely a physical thing that was happening. I knew I would question it later and so would everyone else. I have had little luck with testing and think whatever this is, all my symptoms are related in one way or another. Now that I know more about depression (all I do is read and read about this stuff). I have not excluded that but I don't have any sad, hopeless or feeling worthless type symptoms. I did have a ton of anxiety and felt almost anything could push me over the edge. Everyday I would be calling my husband to make sure he didn't stay late because I couldn't  handle the anxiety caused by my children or anything. I figured maybe I had cortisone/endocrine issues, so I made an appt with an endocrinologist. 

The endo did infusion testing with cortisone and my response was normal, all of my tests were normal. I checked for hashimotos and Sheehan's syndrome. No thyroid issues even though my Grma, mom and sisters have thyroid issues. 

After multiple tests by all my specialists, nothing significantly abnormal has shown up. A bit low on zinc, that's it. 
My sleep doctor said after three months of being on the cpap and using it regularly every night (even though my apnea score was only a 3.7 not even qualifying for a cpap really it has to be 5 or above but he pulled strings and got it for me anyway), we should be able to see how much my apnea/narcolepsy is effecting my extreme fatigue. In the beginning, it started out being complete fatigue/exhaustion and then to feeling like I needed to take naps once a day, now I can sleep whenever. The worst part is feeling like I can't move, I don't know how normal this is with narcolepsy but I haven't seen many people with that complaint. Narcolepsy meds don't work very well if at all. I have had other random symptoms along the way. 
All of this has blown apart my world. I have 3 little kids and a husband to take care of. My poor husband is now being mom and dad and is stressed out of his mind, he is so good to me though, I am so blessed in that way but I can't keep going on like this. My neurologist now thinks I may have juvenile myclonic epilepsy because I got off Wellbutrin and adderall for two months and still had myoclonus. I doubt it highly but there is no other explanation he can find for it. I don't have ms or Parkinson's etc. I have since stopped Wellbutrin completely (which has been the only antidepressent that has helped me) but my neurologist thought it might be the problem.

I have wondered if perhaps I have damaged my dopamine receptors with my long term use of amphetamines but every doctor I have asked about it said it's highly improbable but always leaves it as possible. There are no studies on the long term effects of adderall that I can find, so maybe?? If I don't take adderall, I can't function at all. I am sure my brain relies on it now. I have also wondered if my mutations are causing me not to be able to rid itself of toxins? 

I have wondered if perhaps I have chronic Lyme disease but can't find any doctor that specializes in it on my insurance plan or that go beyond the first basic blood test that is inaccurate for chronic Lyme anyway. I have been bitten many times as a child but could it lie dormant and then suddenly pop out when I start taking accutane? Perhaps? Or  Maybe I have methylation issues that can cause strange symptoms such as these? Probably not but perhaps? I am so desperate for answers, I wish there was a doctor out there that would put all my symptoms together instead of only looking at their little piece of the pie. I know that's asking a lot. 

I have recently tried Trintellix and Fetzima for increased neurotransmitter boost  to see if this would help but felt angry and had suicidal thoughts, only could do three weeks on each of those. Also Tried depakote for myoclonus but I felt suicidal after two weeks, had to quit. I am not a suicidal person and don't like obsessing over not living anymore, I knew it was the meds but I didn't know if I should try to push through and hope the suicide feelings would go away or not so I just stopped them. My doctors never got back to me within enough time to get their opinion but eventually they both thought I did what was right. 


I have had my DNA run through 23andme but can't find anyone that can explain it to me without costing an arm and a leg. I can't cause more financial burden on my husband, he will break. I have bought Dr. Amy Yasko's book and have started to read it but get side tracked with kids and phone calls. I do make it to my Dr appts but I can only do what is absolutely necessary. I have become totally inactive except for doing what is necessary to keep my children alive, which also compounds my issues. Occasionally I take them to the park or sit outside while they play in backyard on playground, I do get some sun. My sister in-law is a pharmacist and she has bought me very expensive herbs and vitamins that I now take and maybe they are helping, not sure. 

If I have narcolepsy, I think I have had it for years. I have always felt there was something wrong with my energy levels and even told my husband when we got married that I knew something wasn't quite right because I was always tired no matter how much sleep I got but whatever this new bout of extreme lethargy is, is beyond description. Not being able to get up and move is not something I have heard a lot of narcoleptics talk about but maybe I am wrong??

Thanks again for everyone's help, I have learned and researched a lot from what people have said. I won't give up until this is figured out and I have crossed everything off my list. Any ideas or suggestions are greatly appreciated.  Thank you all so much. ❤🙏🏼

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@Nikorah I wouldn't waste my time on that Yasko nonsense. She's not a real doctor nor does she know what she's talking about. Chronic Lyme's isn't medically accepted as a real condition so I wouldn't mention it to a doctor. 

Fatigue is different from sleepiness but often is present with diseases of excessive sleepiness. You almost certainly didn't damage your dopamine receptors but it's very possible you've down regulated some receptors from chronic amphetamine use. It's not a permanent thing but the only way to fix it is to take a break from stimulants. 

I think the neurologist may have been right about serotonin syndrome, albeit a mild case. Giving someone adderall, wellbutrin and Cymbalta is just begging for a medication interaction. Cymbalta and wellbutrin are cyp2d6 inhibitors and both are partially metabolized by cyp2d6 as is adderall. Basically it's a terrible combination for a number of reasons.

What I'd ask your doctor about is taking a temporary break from medication, including wellbutrin and any antidepressants or stimulants to the tune of 2-4 weeks to let your body and brain get back to baseline. It needs to be done under medical supervision since suddenly stopping some may cause problems. I'd also take a multivitamin with iron and get a b-complex just to rule out any easily treatable vitamin or mineral deficiency. 

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Nikorah

I have to agree with Jasonm, sometimes it is better to back up and punt rather than continue trials of medications which are evidently not working for you. I think taking a break from all medications for at least a month is more than appropriate, and then I would reconsider repeating the psg/MSLT in an appropriate manner. 

It also is VERY important that you find a sleep Physician with whom you feel safe and trust and who will listen to what you have to say, Stick with one Physician if you can remember too many cooks in the kitchen ruins a meal. 

I wish you best of luck

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Hi everyone, I have wanted to reply before now but have been too sick. I know the controversy over chronic Lyme disease but it doesn't make it any less real. I wasn't sure about getting tested because Lyme disease seemed too rare and the CDC said it's not found here, it just seemed too odd ball for me to have something like that but my husband saw a billboard along the highway that stated Lyme disease is here and listed all the symptoms I had been having, he got me into an LLMD. Sure enough, I have the parasite. My siblings are all sick with a mystery illness as well, I thought we were all sick because of a rare gene (I am sure my mutations don't help with methylation) but no, it's from a freaking tick bite that sent who knows how many strains of bacteria into my body. I think I have had it since I was a child, we were all bit numerous times and had chronic strep. It can stay dormant until you have life stressors that kick your immune systems ass and it multiplies. 

I don't know if this means I still have narcolepsy or if it's a symptom of the Lyme. Maybe the Lyme disease turned the gene on that activates narcolepsy, who the hell knows.

i learned that Lyme disease can be spread in utero, I will get my kids tested. Whole families can get Lyme disease by sharing the same environment. This would make sense as to why all my siblings are sick. We lived in the country where we didn't have neighbors, only fields and apparently infected ticks. Eventually I will get all of my siblings tested and hopefully update this in hope that it will help someone else. 

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My heart goes out to you Nikorah but kudos to you and your husband for getting to the bottom of this. Big kudos as well for taking the time to report back to us with your findings. You will have helped somebody else along the way by doing so. I hope that there is some treatment for you that will get your strength back and be functional again. You don't need any strength of spirit or tenacity... you've got that in spades! Please keep in touch and let us know how you're doing.

 

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As long as you're aware of the controversy you're making an informed decision. I tend to stick with the CDC and medical governing bodies on controversial issues- they're very thorough. 

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2 hours ago, Hank3326 said:

I tend to stick with the CDC and medical governing bodies on controversial issues- they're very thorough.

The CDC has to rely on doctor reports coming in, at least initially, do they not?

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2 hours ago, HBr said:

The CDC has to rely on doctor reports coming in, at least initially, do they not?

Yes they do. And CDC information is constantly evolving and is only as good as what is reported by medical professionals. If it doesn't get reported or those professionals don't even know what to look for or how to test for it or that it should be reported, then the data can be misleading.

A BILLBOARD, is a pretty loud and in your face statement to bring public awareness to a situation. Her husband saw it and she got tested. I hope it was reported to the CDC.

https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2017/

https://www.cdc.gov/lyme/stats/tables.html  ... this is two years out of date but is the most recent.

Generally, the CDC is involved with contagious spreads of disease that put larger populations at risk. Lyme disease is not in that category.

To be safe, assume that all ticks or mosquitoes COULD be carrying a spreadable disease and take precautions.

 

 

 

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If you had been to every specialist with each of them giving you a clean bill of health according to their tests but you can hardly stand up to even get out of bed, there is a problem. You quickly learn they don't have the answer and I never felt good about them all diagnosing me with something different, no tests that could prove it or even kind of prove it. Each of them sending me home with a different drug hoping it would work better than the last, they only made me worse.  When your doctors fail, you are forced to look outside the box.  You spend hours and hours doing research, plus your symptoms match the disease perfectly (although it could match a dozen others) and you know you've been bit by a tick several times, how could you ignore it? Then the word gets out that you have Lyme disease and people start popping out of the woodwork to say they have it as well, I have since found three people with Lyme disease in my very own neighborhood! 

 

The CDC is the government. Lyme disease can't be reported unless it passes the cdc's guidelines which are old and outdated, (even though I have several confirmed tests of the bacteria and the symptoms). If it can't be reported then the government puts very little money into funding. No funding equals no trials, no trials equal no change in CDC guidlines, no change in CDC guidlines means the disease goes undiagnosed, get it? Who is the other player that funds trials? Pharmaceutical companies but there is no reason to fund trials for an already existing drug (antibiotic), so we get no backing from them. So until the government agrees to fund new trials,  people will continue to get sick and die. Doctors are terrified to even say chronic Lyme because they don't want to get shunned by their peers or lose their jobs. Until the government says it's ok to treat, very few doctors will help and people will continue to get sick. This is so wrong. I guess it comes down to being last on the funding totem pole.  I have heard of another political reason but until I do more research I don't want to post about it. 

Meanwhile, I've had to search for LLMDs that treat Lyme patients in secret or find one that doesn't take insurance and pay cash. This is ridiculous! This needs to stop and the government need to wake up to what is happening!

I understand most people are not informed that this atrocity is even going on because you never had to worry about it. I was there not long ago but I have been forced to wake up. 

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Ferret, You said it so well, thank you. You are right when you say doctors don't know how to test for it because they only have the information that is given them and if the tests aren't up to parr then people are falling under the radar, which happens everyday thus no reporting. They did a basic Elisa test for me which showed antibodies a year or two ago but instead of going down the Lyme path, they did further testing for lupus and scleroderma which is fine but they never returned to investigate Lyme even though positive antibodies can be an indicator of Lyme. Soooo frustrating. When the tests for lupus and scleroderma showed negative they basically told me that a small percentage of people show positive antibodies and they don't know why but nothing is wrong. This is back when I was being electrocuted every night and was ready to commit my self to the ER permenantly because the doctors were clueless and kept throwing  me into the fibromyalgia, chronic fatigue basket.  

Lyme disease isn't as high of a priority because the "CDC confirmed" cases are so low. I will write the CDC myself but my doctor is not allowed to report it. I did not have all FIVE bands that the cdc requires on my Lyme blot test even though the bands I have are Lyme specific and I have clinical symptoms. Per their testing, I am perfectly healthy. 

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Thank you Ferret for your kind words. I really hope I can help others along the way, being sick bites. 😉 Thanks to everyone else who spent the time to read this and for your kind words. I wish everyone well! 

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I know someone who has chronic complications from Lyme that was diagnosed very late. Lots of neuropathy and some memory issues that never cleared up, even though they cleared bacteria from her system.Maybe not the same thing as chronic lyme per se, but definitely proves that it can cause you issues down the road. Out of curiosity, do you have trouble with heat?

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Yes, why do you ask? Lyme disease can cause permenant damage or it's still active. 

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Nikorah

Kind of a stupid test isn't it? CDC requires 5 bands to test positive for Lyme or it aint lyme!! really? Lyme should not test positive in any band, If there is one positive band then it is Lyme because people do not generally run around with this present in their bodies.

Lyme is carried by ticks yes, but also by birds, and deer which most folks will not recognize.

I would urge you to research the following organization, they can direct you to a Lyme disease specialist in or close to your area who will treat you. ILADS ( International lyme and associated diseases society).

Again, Best of luck

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Ok. I read your original post stating that you entered R.E.M. Twice and took Adderall to stay awake between naps. But you're not convinced of N because you took the Adderall. 

I think you should repeat the psg/MSLT if your doctor recommends, Otherwise, I do think you have N.

chronic Lyme is pseudo Medicine and would not cause 2 Sleep onset R.E.M.s. 

I was in shock about my diagnosis as well. I completely didn't understand it. I denied that I had cataplexy, even though I actually have severe cataplexy.

i started seeing a PhD psychologist to make sense of my experience. I really needed to talk it out. 

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17 hours ago, Nikorah said:

Yes, why do you ask? Lyme disease can cause permenant damage or it's still active. 

It's a sign of nerve damage to the PNS. Was first observed in diabetics when their optic neuritis would worsen on hot days. Something about the heat reduces the conductivity of the neurons, and for ppl with a damaged myelin sheath, this means their neurological symptoms will worsen.

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